Living With a Medical Condition in an Ableist Society
When I was five weeks old, I was diagnosed with prolonged QT, or Long QT Syndrome. With Long QT, the heart’s electrical system takes longer than normal to recharge between beats. This delay is referred to as a prolonged QT interval. The best explanation I’ve been able to give people is that my heart basically goes too long between beats. On a heart monitor, there’s a line with a bump that represents the heartbeat and the line that represents the rest between beats, the QT interval. My QT interval is longer than it should be.
I inherited the condition from my mother, who found out she had it when she was about fourteen when she had a stroke after doing cocaine for the first time. She had a procedure called a sympathectomy, which seemed to be effective in fixing it, but when I had the same procedure done it didn’t work. Instead, I manage the condition with beta-blockers. These are supposed to help regulate my heartbeat by preventing my brain from releasing adrenaline when it thinks I’m dead because my heartbeat is off, which would lead to a heart attack.
Some of the complications of long QT include torsades de pointes (“twisting of the points”) which is a life-threatening form of ventricular arrhythmia wherein the heart’s two lower chambers beat rapidly and chaotically, making the waves on an ECG monitor look twisted and the heart pump out less blood. The lack of blood to the brain can cause the person to faint suddenly and if the episode is too long, the fainting can be followed by a full-body seizure. If the dangerous rhythm does not correct itself, then a life-threatening arrhythmia referred to as ventricular fibrillation may follow.
Ventricular fibrillation is a condition that causes the ventricles to beat so fast that the heart quivers and stops pumping blood. Unless it is shocked back into a normal rhythm by a defibrillator, ventricular fibrillation can lead to brain damage and sudden death. Other issues include unexplained fainting, drownings, and seizures.
The most dangerous thing I have had happen to me was an incident of going into insulin shock when I was about three years old. My mother failed to consistently administer my medication on a daily basis, which led to me fainting and needing to be taken to the emergency room. Throughout my time with her, I would frequently hallucinate as well.
When I got older I often had what seemed to be night terrors, but as explained to me by a cardiologist, was likely my brain trying to restart my heart with adrenaline while I was sleeping, jolting me awake at night. Even as an adult I still experience these episodes, and it contributes to my insomnia. Doctors have speculated that my sleeping problems and my beta blockers contribute to my depression, since they block the production of certain hormones, possibly including melatonin and serotonin.
Not helping with my mental health issues is my lack of self-esteem in relation to how much I can accomplish. Even today, with all of the progress we have made in regard to marginalized folks, our society is still ableist, it still favors able-bodied people and treats fitness like a virtue, while condemning inactivity as laziness.
These are messages I have internalized, and as a result, the physical limitations brought on by my condition have led to me feeling lazy and weak. I can’t exercise the way other people can because it could bring on a heart attack and literally kill me. That’s not hyperbole. Too much exercise can cause me to faint or kill me. As a kid, I never did PE, I had to give the school administrators a note from a cardiologist telling them I could not do physical education classes.
Even with notes from doctors though, the schools would fight me, and fight my Dad on the issue. They would schedule me for PE every year, and every year I had to give them the same note, despite the condition being permanent. When my Dad brought them the note and explained to them that taking PE classes was not an option, they would argue that I could probably do some exercise and try to convince him to let me participate in some of the activities of PE. They were not cardiologists, and they did not have my condition, but they knew better than the doctors unambiguously forbidding me from taking PE. It felt like I was being gaslighted, being told that my condition was not as serious as I was making it out to be.
I’ve carried this mentality with me into adulthood. In the different jobs I’ve had, I have felt the need to prove that I was capable of keeping up with others in terms of manual labor. I refrained from telling any prospective employers about my heart condition for fear that they would not hire me. I started each job out getting others to help me with heavy lifting, but over the years I came to feel like I was being too much of a burden on my coworkers, and that my value as an employee was in how much work I could handle by myself.
So I took on more heavy lifting, as much as my male coworkers who weigh twice as much as me, with the superior physical strength that comes with being a man. It hurt and it exhausted me beyond reason, but I never felt like I could speak out. I had to prove that I could handle the workload and that I could get the work done independently. If I could not manage the job by myself, what good was I?
This need to prove that I was just as capable as my peers bit me in the ass when I went on hiking trips in New Zealand last year. I had never really gone hiking before, and now I was doing it with a group of people my age and younger. They could all handle it fine, they were able to keep up a brisk pace without needing to stop much for rest. I didn’t have the stamina they did though, because my life without getting in much exercise, specifically cardio, meant that I had never built it up.
I tired easier than they did, I constantly had to stop to catch my breath, to wait for my heartbeat to slow down and the ache in my chest to fade. I had never before realized how out of shape I was compared to others my age, and it made me hate myself. I felt weak, and I felt like a burden, like I was slowing everyone down.
I didn’t want to tell anybody that I had a heart condition because that would only cause them to worry about me, to fuss over me, as often happens when I open up about my condition. If people don’t dismiss the seriousness of it, their reaction goes to the other end of the spectrum; they overreact, infantilize me, and treat me like I’m an immensely fragile, breakable thing, like I’m not an adult who can make informed decisions about my own health, who knows my own god damn limits because I have been living with this since I was a baby.
I live with it and manage it pretty well with my medication, but the US healthcare system doesn’t always make getting access to that medication easy. Growing up, my Dad was the one to worry about taking me to the doctor and getting my medication. I remember one point when we were almost denied seeing a doctor because the hospital would not take our insurance but I hadn’t really dealt with the nightmare that is the American healthcare system until I moved back to California.
I moved out with about a month’s worth of medication left and immediately applied for Medicare on the basis that I did not have a job yet and I needed to take this medication to live. As I waited for the government to approve my coverage, my medication gradually ran short until I had to go through the process of finding a cardiologist who would see me to renew my prescription. None would without insurance.
I had to call the Department of Social Services (DPSS) and be transferred six times before I got it across to them that I needed this insurance approved immediately so I could see a doctor. They retroactively approved me with one week of medication left. It was the most scared I had ever been about anything relating to my heart condition. It felt like all these doctors and the government were essentially telling me that if I didn’t have insurance then I could die for all they cared, and I honestly feared for my life.
I don’t know if I can identify as a person with a disability, because I don’t know if my quality of life is impacted by my condition enough for me to qualify as such. There isn’t much information about my heart condition in relation to disabilities and I have never met anyone with my condition. I have experienced ableism though, and I have struggled with feeling worthless because of it. The conversation around health conditions needs to be more normalized, it needs to expand and grow, so that people like me can feel seen, and can understand our worth beyond our limitations.
